Day 50: Light Bulbs

I had an email today to say there had been an ‘incident’ yesterday evening. My heart sank. After months of calm I was unprepared for this and had stopped expecting it; Dylan’s incident-free days had lulled me into a dreamlike state where I had forgotten such things happened. How foolish of me.  I steeled myself and read on.

The incident was not as bad as I had feared. I had thought that perhaps Dylan had attacked somebody’s ears (a typical behaviour before his move to residential care) but, it turned out, he had smashed a light bulb. I know it’s not great to smash lights and that it puts Dylan and others at risk. Because it’s something Dylan has done for years, however, it’s not something that causes me undue concern. I’m pretty sure Dylan does it for kicks; he likes the sensory effects of breaking glass I think. I’ve certainly no reason to suspect that smashing light bulbs is triggered by Dylan feeling anxious or upset. So although I’m sorry that Dylan broke a bulb, I’m relieved the incident was not what I feared.

The email set me thinking again about how much Dylan’s behaviour has improved since his move to residential care. Previously I’ve speculated that Dylan is happier now because of three factors: diet, activities and visual communication. It was problems with one or more of these, I have suggested, that was at the heart of Dylan’s distress last year. I don’t want to criticise or point the finger at either myself or the day centre which Dylan attended at the time, but it is important to me to understand why Dylan is so much happier now and, inevitably, this involves asking difficult questions.

I have tried to put myself under the microscope, for example, by asking whether there were aspects of Dylan’s life at home which he might have found challenging. Similarly, I have considered whether there were practices at Dylan’s day centre which might have triggered his distress. I don’t spend significant amounts of time going back over this ground; my inclination is to move forwards rather than to look back. Every so often, however, something happens (like a light bulb) to cause me to reflect on Dylan’s behaviour during the last year and the positive change in him since his move to care.

*

WP_20151102_11_23_59_ProI bought myself a piece of cake at work today. I’d been thinking about eating cake, I realised, since yesterday afternoon when I didn’t have any because Dylan couldn’t.  We had called at a tea shop after our walk with Caroline and Mark but, because it was late, savoury options were no longer being served and cake was the only option.  I couldn’t be sure, I admitted to Caroline, that sugar really was implicated in the aggressive behaviours that had seemed to overwhelm Dylan last year. I had, however, thought I’d seen a link between diet and behaviour when I’d had an opportunity to monitor this (while we were on holiday, for example). What muddied my hypothesis, however, was what I didn’t know.

I didn’t really know, for example, what Dylan had been eating and drinking at the day centre he attended at the time. When I read the descriptions of his lunches I used to think the food combinations unusual and often unhealthy (too many carbs) but there was nothing to challenge in relation to the principles of a low sugar, vegetarian diet. Having watched Dylan lose a stone in weight since moving to residential care, however, I now think questions might have been asked.

In particular (as I have argued previously) a buffet system is not a helpful approach for adults who can’t self-regulate and who need support with portion size. I used to puzzle over reports, some days, that Dylan had been sick; I am pretty sure, now, that this must have been from over-eating. Could this have contributed to Dylan’s agitation? And Dylan may not just have been consuming too much food, but the wrong foods.  Let’s say, for example, that he was drinking orange squash (rather than orange juice) through the day in fairly large volumes; that would add up to a lot of sugar (even in a low-sugar variety). If this were the case, Dylan would have been buzzing (from E numbers as well as sugar) when he got home in the evening; could this explain the outbursts of aggression he became prone to?

Food is an important issue in relation to the care of vulnerable adults: in order to maintain his healthy weight Dylan needed support with portion control; because of the possible link between sugar and aggressive behaviour he needed guidance with food choice; and because of our cultural practices at home, Dylan needed access to a vegetarian diet. I’m not convinced he had these things and it’s possible that it contributed to Dylan’s distress. I might be wrong, of course, but it’s something that comes into my head from time to time; mostly, however, I’m just glad things are better now.

7 thoughts on “Day 50: Light Bulbs

  1. I thought this was a very brave article to write. Not ‘brave’ perhaps in the conventional sense, but brave in how you have obviously been looking at yourself for possible contributors. It’s something which many of us seem unable to do, or at least are extremely reluctant to face, so we’ll done you. I am very happy that you seem to have found the right place for Dylan and there appears to be a lot more balance to his life. I wish you both a settled and ‘incident free’ future. Great post👍😊

    Like

    • Thank you for this comment – I appreciate it very much. It is very challenging, I think, to consider ourselves as possible contributors to a difficulty. However, with autism I think we must as so much we take for granted can be challenging for the person with autism. It really does challenge us at every level, even that of what it means to be a ‘good’ parent!

      Liked by 1 person

  2. It’s interesting how so many people don’t consider the links between the foods we eat and how we are. Most of us can tolerate processed foods and their additives, or at least our bodies have grown accustomed to their presence. Given that people with autism are often highly sensory, it makes sense that some people might also be highly sensitive to some ingredients. I think you could be right about the link between foodstuffs and how Dylan was. It’s good that his team where he lives are more attuned to him. Day Centres are too often a place of the Great Unknown

    Liked by 1 person

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